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Build with what you have

Blog Summary

Building with LEGOs often results in an interesting quandary: the more one builds, the fewer pieces you have left in the collection, no matter how carefully they might be organized for easy retrieval. Living with a chronic, progressive, debilitating disease like multiple sclerosis is a lot like that. It can be described as “the gift that keeps on taking.” Ones strength, cognitive resources, coordination and stamina are all taken away slowly but surely…sometimes even quite abruptly...

Exciting News for Progressive MS Research

Blog Summary

Hello from the ACTRIMS-ECTRIMS meeting in Boston. Today I had the honor of participating in a press conference to announce important news about the International Progressive MS Alliance. I was joined by my colleagues from around the world to share the Alliance strategies for ending progressive MS, and we also answered questions from a room full of reporters from around the world. The Alliance announced the launch of 22 new research grants to investigators in 9 countries, who will be taking intriguing new approaches to overcome barriers to developing treatments for progressive MS. Many of the new grant recipients were at the press conference, and the atmosphere was electric! ...

Hellos and Goodbyes

Blog Summary

I’m sentimental about endings. When I know I’ve reached one, I pause and hold on as tightly as I can. The last time I sat on the floor with my friends and sang at summer camp. The last time I had dinner with my roommates before we graduated from college. The last night I slept in my own bed at my parents’ old house. These are moments to be marked and savored. They give you a chance to say goodbye. The endings that you don’t recognize are even more poignant. The last time I said goodbye to my grandmother, not knowing that I wouldn’t see her again. The last time I kissed a boy, before an argument that ended everything. I think about these lost endings, which skated by so casually in the flow of an ordinary life. I want to go back and put a mark on those days. Plant a flag. Recognize them for what they were: not always sad, but always important. Moments that defined and framed chapters in my life, even as it changed to become something new...

Good News

Blog Summary

I think it was sometime in September of 2012 that I initially went to see a doctor about my weak leg, which led to my diagnosis of multiple sclerosis, which led to lots of specialists, lots of scans, and lots of follow ups. Suffice it to say: I’ve had a lot of appointments in the past 20 months. And in general, the news has not been good. I always put a positive face on it, but at this stage it’s hard to go in expecting the best. So I was happily caught off guard when my last scan came back BETTER than the last. Finally! It’s what I’ve been waiting for since the whole damn thing started. There’s no new inflammation and the spots in my brain are smaller than they were last time. My neurologist uses bigger words to explain all this, but summed it up with the colorful stickers that she attached to my results...

Progress in progressive MS: Report from the trenches of MS research

Blog Summary

One important way researchers share their latest findings at big meetings like the American Academy of Neurology is during the twice daily “poster sessions.” During these sessions, researchers display the results of their studies on wall sized posters and these posters are pinned to rows upon rows of portable display boards in one of the largest halls of the convention center. During these “sessions” the authors of the posters stand by their boards and are available to present and discuss their work with other scientists. Think scientific speed dating! The MS poster sessions have been jam packed, so it really feels like you are in the trenches of MS research. We are learning more and more about what drives MS progression, or worsening – which many people with MS will eventually experience. Understanding the factors that drive MS progression will provide new approaches to stopping, reversing and restoring what’s been lost. One of these factors appears to be smoking. Previous studies have shown that smoking can increase the risk of developing secondary progressive MS (the progressive form of MS that follows an initial diagnosis of relapsing MS) by as much as 3-fold! The good news reported this week during a poster session on MS health outcomes research is that this risk is reduced by quitting. The authors found that for every year that passes after a person stops smoking, the risk for progression is reduced by 5%. The reasons why smoking promotes progression remain to be determined, but I think we know enough now to strongly state that people with MS who smoke should really stop...

My Silver Lining

Blog Summary

I was diagnosed with relapsing-remitting MS (RRMS) when I was 36, in the prime of my life and career as an athletic trainer. I tried all three disease-modifying therapies that were available at the time but unfortunately none were helpful to me. In 2003, I traveled to Northwestern University hospital in Chicago to enroll in a clinical trial. It was a bone marrow transplant study and even though the therapy had a high mortality rate, I was willing to take the risk to help better understand and treat MS; but I was not accepted.  That was probably the toughest day in all my now 17 years of battling the challenges MS presents; not just because I was not accepted into the trial, but because it was the first time I was told I had primary-progressive MS (PPMS) — I now know that I had PPMS from the start, but because it manifested so slowly, no doctor was able to "label" me with it right away. Hearing I have a form of MS that is chronically progressive and has no therapies felt like being told to “go home and make the best of it” because they had nothing to offer me.

Progression.

Blog Summary

I’m approaching the one year anniversary of my diagnosis with multiple sclerosis, and as you can imagine, it’s on my mind a lot. Although I don’t know if there’s any way to really be prepared for news like this, I obviously knew that MS was a possibility. I’d been asked a lot of questions about “numbness and tingling” and it takes about 10 seconds and Google to understand exactly what that means.

Labels

Blog Summary

I’ve been thinking about labels a lot lately. Specifically, the ones I use for myself. We all have them, don’t we? Especially with the inevitability of social networks these days, we’ve had to get more comfortable putting some kind of picture of ourselves forward to the world. And even if you’re a very private person, you probably know which boxes you fit into. Me? I’m a woman and a sister by birth. I’m a Southerner because of where and how I was raised. I’m a wife and a mother because I chose to be so. I’m a reader and a writer by nature and profession. These are intrinsic, unchanging pieces of me, and have been for most of my life.

Emerging strategies to stop progression and restore function in MS

Blog Summary

When I started as a laboratory immunologist more than 20 years ago, the major focus in MS research was searching for ways to turn off the destructive immune attacks. These efforts paid off as there are now immune-based therapies that can help control relapsing forms of disease for many people. While researchers continue to look for ways to improve the treatment of relapsing MS, the focus in MS research is shifting to discovering strategies that stop MS progression and repair the damage that causes disability. This has relevance to people with all types of MS, but especially people with progressive MS.   In 2005 the National MS Society made significant investments into nervous system repair and protection research – and we continue to see some promising results. People are excited by the possibility, once only a dream, that we will find a way to repair damaged myelin. This is important not only for restoring  function, but many believe that re-establishing the protective myelin coating on axons will shield them from further harm. As noted neuroscientist Dr. Bruce Trapp said during his presentation, “Remyelination is the best neuroprotective strategy for MS patients.”  

Wait, wait! Don't tell me.

Blog Summary

Fall is coming. The fields and farms out past my house are starting to look like they did last year, when I took a long walk in the late summer and noticed that one of my feet was dragging a little bit. When I walk out there now, and see the seasons changing, I can’t help but think about everything that’s happened in the past year -- my initial MRI, diagnosis, all the subsequent appointments, and the start of the medication and a different diet. In a few weeks, I’ll have a follow up MRI and another appointment with my neurologist.  Maybe the medication is doing what it should. Maybe all this healthy eating has done some good! If not, it’s back to the drawing board (maybe after a giant ice cream cone) and we’ll see what might come next.

Dear Self

Blog Summary

As of last week, it’s been six months since I found out that I have progressive MS. This is the first of many milestones that I’ll pass. Six months, a year, or five years, or ten. I think it’s human nature to take notice of these moments and to find some way to mark them. But for me, and I suspect for you, they aren’t occasions for flowers and balloons. It's not a gleeful anniversary. So what to do?